I will try and keep it as brief as possible.
I can't tell the story without a little history of my family and myself.
I became a father at the age of 19 in 1991 with my oldest son Nathan. As a VERY young and new father and husband I had no clue what I had gotten into. Luckily, I had the best wife anyone could ask for Tracy. She put up with all my immaturity and together we started our family. It was a challenge but we were in it together and we did the best we could and that turned out pretty well! Nathan is and has always been someone I can take pride in . He makes us both happy with his great personality , bright perspective, and one of the smartest fellows I know!
We had our second child born on June 24, 1996. When he was born he decided to give us a BIG surprise!
Dylan had Down's Syndrome.
We, the whole family, were in shock. We had no idea anything was “wrong”. We had no idea what exactly Tristomy-21 was, we had no idea what a treat he would be! After being told all that....Dylan was taken from our local hospital to a Pediatric Hospital . Tracy didn't even get to hold him in her arms before they took him in the ambulance. I don't know how I can explain the anguish I felt for her. No one should ever be put through that.
Dylan was released and went home with a clean heart! We were so happy ! A few days later we headed back because he needed surgery. He had a Duodenal Stenosis. How crazy those days were . We were so scared and thought the world was ending. It was repaired and we were back home within a few weeks.
I personally had never been around many folks with Downs. I didn't have a frame of reference. I only knew that this little fella depended on me for his life. HOW could I let him down?
He became so precious to me. His snuggles were different. It was obvious to me really quickly that he was a unique little fellow!
He became a HIGH functioning child and learned to speak and collaborate with his class. He was quiet until he knew you, but you were a member of the “special club” when he trusted you! Dylan would open up and NO ONE ever forgot when Dylan admitted you into his heart.
Dylan was a special child because of his personality. Downs just made him a softer hearted individual. I really believe he “felt” more than most people. His heart was so open to the emotions of others. When he hurt someones feelings and knew it, it hurt his heart and he had to let them know he was sorry.
I have a special place in my heart for all Downs children because I believe they know so much more about feelings than we non Downs do. We should learn from them.
In November of 2006 In November, he started being somewhat lethargic, running a low grade to moderate fever, not eating as well, having joint pain, and having joint swelling. After several trips to the Doctor, several blood work ups, a trip to a pediatric immunologist, and a CT scan (which all showed normal), a complete diagnosis was not positive. We were told possibly he had juvenile onset rheumatoid arthritis in May of 2007, and started treating as such.
On the night of August 7th 2007 Dylan had a severe chest pain. After several more tests, another CT, a biopsy, and a bone marrow test , we finally had a definitive diagnosis on August 7th, 2007. Dylan has Nodular Sclerosis Hodgkin’s Lymphoma.
In January 2008, Dylan went into remission. However, in August 2008, he relapsed once again. This time, he had to undergo a more intensive chemotherapy, an autologus stem cell transplant in February 2009, and radiation. When we thought we were finally finishing treatment, Dylan developed Post-Transplant Lymphoproliferative Disorder, which was a different form of cancer due to transplant. He underwent another 6 month round of chemo for this.
He went into remission in December 2009 and stayed in remission for a full year. Then in December 2010, he started running fevers again. Of course, this caused us great fear that his cancer had come back again.
However, after several tests, it was determined that he had histoplasmosis, which is caused by a bacteria found in the dirt. People with suppressed immune systems tend to develop this. It put up a red flag to his transplant doctor, who said that Dylan's immune system should be built up from his stem cell transplant enough to fight off this bacteria. After further testing, it was determined that Dylan had an immune system deficiency. His immune system started shutting down when he reached about the age of 10....which is what caused all of the above to happen.
We took all that in stride. We watched a strong child fight for his life. Dylan did everything he could do. The whole while he showed us how to be strong, love, and try to be ourselves.
He developed something called chorea in 2012 and it continued to devastate his central nervous system until he passed away on August 7, 2012.
I know it is strange to learn life lessons from a child.
I want everyone to know that I thank God for having him as a son. He has taught me so many lessons I would LOVE to share, if anyone wants to know!
Dylan never asked for anything besides macaroni and cheese.... He only wanted us to all work together and keep stuff working without too much interference. He didn't Like problems!
Nodular Sclerosis Hodgkin’s Lymphoma
June 24, 1996-August 7, 2012